[CabinGirl]

Constant headaches - what's the cause?

by CabinGirl on Fri Aug 26, 2016 11:24 am

I would like to ask if anyone has experienced similar issues or have any suggestions for me to try that I have not yet thought of. I am determined to resolve this issue.

I was diagnosed with multiple myeloma in August 2014. I have the 17(p) deletion, so I'm considered high risk. I completed four rounds of RVD (Revlimid, Velcade, dexamethasone) and had a successful autologous stem cell transplant in February 2015. At my Day 100 checkup around June of 2015, I started Velcade maintenance (every other week), which continues to present. I take acyclovir twice a day to prevent shingles.

I began getting daily headaches around January 2016 that have continued to this day. The headache pain goes across both cheekbones, behind my nose, and the pain wraps around to the center back of my skull and feels like a tight band around my head. Even my upper teeth throb as well. I have consulted with my Mayo specialist, my local oncologist, a neurologist, my primary care doctor, a chiropractor, and my dentist.

Here's my journey to find the cause of these headaches:

• Brain MRI to rule out tumors - results were normal findings
• CT scan of sinus -- no infections -- normal findings
• CT scan of facial bones -- bones including jaw all appear normal
• Sleep study -- to rule out sleep apnea -- normal
• Started Estrodial (estrogen) -- Primary doc thought maybe I had hormone deficiency
• Completed a steroid pack of methylprednisolone -- no relief from headache
• Completed a one month prescription of naproxen (375 mg tablets) x 2 day -- no relief
• Completed 2 different strengths of amitriptyline for 6 weeks to break headache cycle -- no luck
• Tried taking gabapentin (300 mg) 2 or 3 times daily for nerve/facial pain - no luck
• Completed 7 sessions of physical therapy to work on neck/facial muscles
• Purchased a new expensive pillow (PT therapist recommended) for neck alignment
• Purchased a $450 mouthguard (dentist thought I'm clenching teeth in my sleep) I continue to wear hoping for some type of results.
• Completed about 15 sessions of acupuncture to treat headache - no relief

I thought maybe the headache was being caused by something environmental (in my home), so stayed with friends (a week each time) to see if changing surroundings would help but the headache continued while traveling. I have tried to eliminate caffeine, artificial sweeteners, chocolate, etc., things that are headache triggers. No luck yet finding headache relief.

So ... does anyone have any suggestions for me or is anyone else experiencing something similar?

I'm willing to try about anything at this point.

[kshornb]

Re: Constant headaches - what's the cause?

by kshornb on Fri Aug 26, 2016 11:51 am

Hi CabinGirl:

I am sorry to hear that you are struggling with headaches. In my opinion there are few things worse to have to deal with on a daily basis. The one doctor that you did not mention seeing was an ophthalmologist. I had frequent headaches during both my induction therapy and stem cell transplant, and actually suffered a AION in my right eye early in my treatment, from the anemia caused by the multiple myeloma.

One potential side effect from chemo is glaucoma (not that you have glaucoma), but it is caused by pressure behind your eyes that can cause headaches. I was recently diagnosed with having a completely closed angle in my right eye and partial in my left, since this is sudden, they are contributing it to the chemo treatments. This is what can lead to glaucoma - please see below.

What is glaucoma?

• There are two main types of glaucoma. They are open-angle glaucoma and closed-angle glaucoma.
• Open-angle glaucoma occurs over time, and is the most common form. Closed-angle glaucoma occurs suddenly.
• Glaucoma is an eye disease where the optic nerve is damaged. Increased eye pressures cause this.
• In order for your eyes to stay healthy: A special fluid is present that surrounds your eyes, that helps the eye keep its shape. The fluid in the front of the eye (the aqueous humor), flows from a back chamber, to a front chamber, and then drains out of the eye. The fluid that is normally drained out of your eyes, with glaucoma, may build up, if eye problems exist with the drainage system. These eye problems may happen over time, with age, or all of a sudden.
• Without treatment, the pressure on the optic nerve may cause irreversible blindness. Therefore, with any type of severe eye pain, you should seek emergency assistance.
• Usually, in open-angle glaucoma, both eyes are affected. However, you may experience glaucoma in one eye at a time only.
• Glaucoma cannot be cured, but it may be managed.

I haven't had the surgery yet to see if it helps with my headaches, but it may be worth a trip to your ophthalmologist.

Best of luck to you.

[loveparis]

Re: Constant headaches - what's the cause?

by loveparis on Fri Aug 26, 2016 11:52 am

How about trying hypnotherapy? If you have ruled out any physical or structural cause, it might be worth a try. I tried it once for insomnia and it really helped me.

Also, how about a thorough eye exam? Many eye issues cause headaches and it might also be worth a try. It looks like you gone down every other avenue already.

Good Luck, LP

[Mark11]

Re: Constant Daily Headaches. What's the Cause?

by Mark11 on Fri Aug 26, 2016 12:34 pm

Hi CabinGirl,

Sorry to hear about this issues. I agree with kshornb that constant headaches are difficult health issue to deal with.

I am assuming your Mayo doctor discussed that headaches are a known side effect of Velcade (bortezomib).

"The less common side effects (occurring in about 10-29%) of bortezomib include head­ache, insomnia, joint pain, arthralgia, myalgias, edema of the face, hands, feet or legs, as well as low white blood cell count (which can increase risk of infection, short­ness of breath, dizzi­ness, rash, etc.). The mechanisms of bortezomib induced-side effects are still not clear. Bortezomib is able to activate the mitochondrial-based apoptotic pathway and therefore mito­chondrial and endo­plasmic reticulum damage may play a key role in bortezomib-induced side effects. This is supported by an in vitro study in which the mitochondrial-mediated dys­regu­lation of calcium homeostasis is a critical regulator of bortezomib cyto­toxicity."

Source: Chen, D., et al, "Bortezomib as the first proteasome inhibitor anticancer drug: current status and future perspectives," Current Cancer Drug Targets, March 2012 (link to abstract, link to full text at Pubmed Central)

Did you make an attempt to adjust the dosing/schedule or discuss trying another maintenance drug?

Mark

[CabinGirl]

Re: Constant headaches - what's the cause?

by CabinGirl on Sat Aug 27, 2016 12:19 pm

Thank you for your replies.

I took your suggestions and made an appointment with my opthamologist. That appointment is next week.

To Mark 11 -- My Mayo specialist did not highlight that Velcade has headaches as a side effect. I see that my acyclovir prescription paperwork has headache listed as a side effect. I asked my local oncologist if I could stop taking acyclovir and his response was, "No, because shingles would be worse than a headache."

My oncologist states that the Velcade (every 2 weeks) is working well and it's keeping my M-spike to an undetectable level and all other CBC blood work results are within normal range. Therefore, his opinion is to continue with the same dosage and schedule because it's working so well. I was receiving Zometa monthly, but Mayo specialist reduced that to quarterly because he questioned if Zometa could be causing the headache.

I'm determined to find the cause of the daily headaches, but my quality of life is certainly being dragged through the mud right now. I'm hoping for brighter and pain-free days ahead. Thank you again for your responses.

[kerrirunnergirl]

Re: Constant headaches - what's the cause?

by kerrirunnergirl on Sat Aug 27, 2016 4:41 pm

Hi there.

My first thought after reading your post was the acyclovir side effect..

My husband took acyclovir on Saturday and Sunday only during treatment. Our oncologist said this was sufficient to prevent shingles while on Velcade. Maybe you could try this and see if head­aches decrease.

Good luck. Kerri

[Christa's Mom]

Re: Constant headaches - what's the cause?

by Christa's Mom on Sun Aug 28, 2016 9:39 pm

Hi CabinGirl,

So sorry to hear about your headaches. I don't have multiple myeloma, but I do understand head­aches! I woke up one morning with a headache that lasted six years. I tried everything and nothing worked. Finally, my neurologist tried Botox, and it worked like a charm! It's approved now for people who have headaches more than 15 days a month.

One other thing: You may want to get your thyroid checked. My thyroid also turned out to be part of the problem.

Good luck.

Lyn

[Hummingbird]

Re: Constant headaches - what's the cause?

by Hummingbird on Sat Sep 03, 2016 2:41 am

Hi,

I have suffered chronic sinus infections since starting treatment. I am told they are very common with multiple myeloma. Your symptoms sound so much like sinus problems, I am confused why none of your doctors have suggested it. Antibiotics work well, usually Bactrim. Please ask about this possibility.

Hope you feel better soon!

[CabinGirl]

Re: Constant headaches - what's the cause?

by CabinGirl on Sat Sep 03, 2016 2:08 pm

To Christa's Mom and Hummingbird:

Thank you for your replies. My thyroid was checked in April. Normal. The CT scan of my sinus said there was no infection. I've been taking over the counter sinus medications to see if that helps with the symptoms, and it does, for a short duration. I will certainly ask about an antibiotic when I return to my doctor in 8 days.

Thanks again.

[brandywine]

Re: Constant headaches - what's the cause?

by brandywine on Sat Sep 03, 2016 3:34 pm

In the "for what it's worth" department: Eliminate foods or other items that could cause allergies. I use all non scent laundry detergent, non scent soap and deodorant, baby shampoo, non scent hair spray. My sister gets headaches from nitrates, MSG, and chocolate, plus items that cause migraines. Just a thought.