Migraines/headache and back pain post harvoni!!!

[safe haven]

Hi,
just wondering finished my treatment last week, 8 weeks harvoni. I had constant headaches from week 4, was thinking will resolve after treatment. However, they are getting worse and my doc yesterday concluded that I have got migraines now. Is anyone else has the same experience ?? I have no history of headaches.

Also I have got back pain every now and then from 3 weeks. Could it be due to Harvoni?

Any help much appreciated
Thanks SH

[AllShookUp]

Like you, SH, I had no history of headaches prior to treatment. I had a lot during treatment. Some were like generic headaches and some were most unusual in that they were very localized with quite intense short stabs of pain. They diminished in intensity and frequency after I stopped the drugs.

Months after clearing the drugs, I was still having light headaches and noticed that my vision was pretty poor while wearing my eyeglasses.

Went to my eye doctor for exam and new lens prescription, got new glasses. No more headaches.

[lporterrn]

My approach to looking at these potentially related problems is to be equally open to the possibility that it is related to the hep C meds and that it is unrelated. When we pursue only one possibility, we may rule out explanations that can lead us to a solution.

Also, I encourage patients to also look at the meds they took to manage their side effects, because they may be the culprit. For instance, if you regularly took pain relief medication for your headache, these drugs can cause a rebound headache. This means you get a headache as these wear off, making you need to take them again. And they can get worse. For many years, the thought was that ibuprofen, naprosyn or aspirin would cause these and that acetaminophen (Tylenol) would not. Wrong. Now it looks like they all do.

I had back pain from all of my treatments but that was because I spent more time on the computer and I had slacked some on my fitness routine. Sitting is the worst for the back. When I was on interferon, I spent a lot of time on a couch which was not good for my back.

[I fightis thetitis]

Ironically, prior to my 24 weeks of Harvoni tx I suffered from the worst kind of migraines called migraine with Aura. Which means preceding each attack I would temporarily loose partial vision. (Aura) Averaged around two a year.
I have had none since 11/2015 when I started tx.

Perhaps my migraines were a by product of hep C.
It is important to distinguish a migraine from a Tension headache that are mild compared to a real migraine. I had tension type headaches with Harvoni.
 
There are some really good meds for migraines. Imitrex being one that is highly touted by nero's and your Dr. will prescribe if dx as a migraine..

Best of luck,
Greg

[Luna7]

Hi,
just wondering finished my treatment last week, 8 weeks harvoni. I had constant headaches from week 4, was thinking will resolve after treatment. However, they are getting worse and my doc yesterday concluded that I have got migraines now. Is anyone else has the same experience ?? I have no history of headaches.

Also I have got back pain every now and then from 3 weeks. Could it be due to Harvoni?

Any help much appreciated
Thanks SH

Hi Safe Haven

Some people do indeed appear to be suffering from the effects of Harvoni. Numerous drugs cause damage to the mitochondria part of cells in varying degrees. Some people are able to recover from this damage easier than others. It appears at this point that some people are simply more sensitive to mitochondrial damage, and even have mitochondrial disease from birth, while others develop mitochondrial disease due to external agents (like, for example, medications).

The FDA does not require mitochondrial damage assessment for drug approval, but when you read studies on direct-acting antivirals (DAA's) you will find it's a concern during testing. Some of the earliest DAA's were horribly damaging.

Most doctors are not informed by drug reps about mitochondrial damage, and so most doctors at this point in time don't look for it. So you will have to find a doctor that understands this or treat the damage yourself. Fortunately, there is much you can do to repair mitochondria.

A few studies and articles regarding the subject:

http://psychrights.org/Research/Digest/NLPs/DrugsCauseMitochondrialDamage.pdf
https://www.ncbi.nlm.nih.gov/pubmed/18626887
https://www.ncbi.nlm.nih.gov/pubmed/16101504
https://www.ncbi.nlm.nih.gov/pubmed/16248817
https://www.ncbi.nlm.nih.gov/pubmed/21046879
https://www.ncbi.nlm.nih.gov/pubmed/19891905

It's difficult, but likely you can find a doctor that specializes in mitochondrial disease in your area.
However it appears that most people recover with time.

What has helped me the most is drinking specific types of bone broth and whey protein (containing vast amounts of properties that nerves need for optimal health), along with substances that help digest the protein (fermented vegetables and kombucha, both supplying needed enzymes for protein synthesis).

Best of luck...
Luna

[Mila]

I ended my 12 week treatment the beginning of September 2016. I am still HepC free.

I periodically suffered from the Classic Migraines (with aura) off and on from the age of 27. I had headaches all the time on Harvoni. All the time. I continued to have them until about the middle-end of November and they suddenly stopped.

Another thing I experienced on Harvoni in the last 2 weeks was a strange sensation in my heart that felt like the beats were big and bubbly. It stopped when treatment ended. As soon as the headaches stopped I started having the weird heart thing again so I am talking to my doctor today. I had a bad cold this week and started having what felt like chest pains behind my heart. I am kind of scared and seriously hoping that its nothing but a bad respiratory infection and that Harvoni did not damage my heart. I will keep you posted.

~Mila

[lporterrn]

I am really hoping that people with cardiac complaints related to treatment get an EKG (and a Holter test if prescribed) - we need this evidence. If it is abnormal, please, please, please report to the FDA.

[Mila]

Iporterrn~
Thanks for adding that.
It's why I called my doctor, I told him about the bubbly heart feeling on Tx and it had gone so we let it go, but not now. This is scary! I have heart disease in my fathers side. He and every one of his mothers male relatives died from artherosclerosis. I do not take this lightly at all. And I hope no one else does either. Your heart is basically your motor.

~Mila

[safe haven]

Thank you all of you for replying. My headaches are still there so I think gone down in intensity and frequency. I am hoping may be after a while they will wear off quickly. I have been prescribed sumatriptan which gave me lots of side effects and I cannot take it anymore. And I have decided just wait now and see.

[WholeFoods]

Hey, I'm 2 years post in 3 months. My back pain and headaches are beginning to lessen, but I've also made drastic changes in my diet and environment, so I don't know if its coincidence. What I still have is severe migraines twice a month that involve intense upper body pain, also irritable bowel syndrome that is exacerbated by a variety of foods; gluten, chocolate, red meat, spices and dairy, occasionally eggs. I have had problems with both ailments in the past, so perhaps the stress of treatment threw them into active mode again. I just hope it all gets better with time because the changes I made are making daily life fairly high maintenance.

[I fightis thetitis]

Hi there Whole Foods!

Would you say that perhaps you had as difficult a time before treatment, with symptoms that may be un-related to treatment, than post tx?

It seems I have noticed that several folks who had symptoms like fatigue prior to DAA treatment, also acquired new symptoms post. Those being tinnitus, joint/muscle pain and extreme fatigue.

It is hard to track what symptoms/ailments the HCV was causing us, vs the DAA's post tx.  Being an exercise and health nut for years, I am hyper sensitive to meds and I certainly felt the nerve Harvoni connection. Which explains brutal ear ringing and joint pain.
But, I would do TX again in a heart beat considering the measurable damage HCV had been doing to my Liver.
Plz keep us updated!!
Best of luck to you and a healthy 2017!

Greg

[WholeFoods]

No, these symptoms were not as difficult before tx. However, I did have gallbladder surgery several years before tx and that changed my digestion, being that food would often "go thru" too fast. I attribute the need for gall bladder surgery to liver damage from HepC. The post-operative symptoms would occurr every couple of months. Post-tx, the symptoms occur several times per month. The migraine headaches normally occur with greater frequency when my body is stressed. I was getting them up to three times a week on and just after tx. They are down to twice a month now, which is a little more "normal" for me.

I remember reading somewhere about the mechanism by which Harvoni entered the bloodstream and thought I saw something about the "illieum" (?) or some part of the intestine in particular, which I thought was right about where I was feeling a sense of fullness beginning at week 4 or so, and every time I started to feel that, I would get irritable bowel symptoms, which remain ongoing. I find that certain foods exacerbate it, so that is the high maintenance diet changes I was referring to in my previous post. I seem to now be overly sensitive to a lot of different foods, thus my forum handle... I can really only "safely" eat Whole Foods that are bland. UGH! No eggs or dairy though.

I STILL hold hope!  Thank you Greg. I hope you have a healthy 2017 too!

[WholeFoods]

Shout out to all of you all suffering from joint pain and migraines in this cold cold winter weather. Particularly if you have to go out in it for any reason. Cold makes the pain very close to unbearable. I am losing my patience with it all already!

[safe haven]

I am still suffering from headaches. They have gone down in frequency but intensity remains the same. Doctors have prescribed me amitryptiline which seems to help. I m hoping that my headaches will go away one day. They are really affecting me.